Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

I'm a 46-year-old Caucasian male living in Des Moines, Iowa, and I have suffered from moderate to severe RLS for over two decades. In the last year, my symptoms began interfering with my sleep so badly that it was beginning to ruin my life. I was unable to fall asleep at regular hours. When I did sleep, it was for only 3-4 hours at a time. I was having difficulties with mental and physical functioning in all areas of my day-to-day life.

I had tried several prescription medications I see listed in the comments on this board. I tried a vibrating pad (similar to Relaxis). I tried massages and showers with alternating hot and cold water before bed. Nothing seemed to make a bit of difference for me.

But then this last summer, I stumbled upon an article in the peer-reviewed Pharmacy and Pharmacology International Journal. The article is entitled, "Use of Potassium Citrate in Restless Legs Syndrome." You can find it here: http://medcraveonline.com/PPIJ/PPIJ-04-00079.pdf. It explains that physicians had been treating heart patients with 10mEq of Potassium Citrate, and found that, by chance, the patients with RLS noted that their symptoms resolved. So the doctors did a full, separate study involving 81 patients with mild to severe RLS. They prescribed 10mEq daily for 45 days, and found that all 81 patients experienced a significant reduction in symptoms.

So I went to my physician, showed him the article, and asked to try Potassium Citrate. I had my potassium checked, and it was normal, so my doctor doubted that this treatment would work. I was skeptical of it working as well, as I know just one study with n=81 does not constitute anything conclusive. I have not seen those results tried or replicated in any other medical study. However, after only a week of taking 10mEq of Potassium Citrate at dinner time, I began to notice some relief. By a month and a half, my symptoms had gone from severe to non-existent. To this day, 5 months later, I still have absolutely no RLS symptoms. I have my life back again.

I'm sure this probably sounds too good to be true, and perhaps it is. Perhaps in another 6 months, I'll experience augmentation and I'll have to try something else. But I couldn't pass up sharing this seemingly miraculous "cure" with other RLS sufferers. I've had my potassium levels checked since taking the drug, and those levels have stayed normal. I have not had any side effects.

I sincerely hope that those of you desperate to find relief will try 10mEq of Potassium Citrate daily for two months. I also hope further medical study will corroborate the results found in the study I'm reporting.

I've suffered from RLS for well over two decades, and over the last year, it had become severe. I'd been getting only 2-3 hours of sleep a night, and it was ruining my life. I'd tried different medications, the Relaxis pad, massage, showering with hot and cold water, etc. Nothing seemed to work for me.

But this last summer I came across this article about the "Use of Potassium Citrate in Restless Leg Syndrome." You can find it here: http://medcraveonline.com/PPIJ/PPIJ-04-00079.pdf. In a peer-reviewed study of 81 patients, doctors found that 10mEq of Potassium Citrate daily significantly diminished symptoms for every patient, mild to severe.

I was skeptical that this would work, as it's only one study of 81 people. My potassium levels were normal. But my physician prescribed it for me. After about a week, I noticed less urgency in my RLS, and by two months, I was completely symptom-free. I went from severe symptoms to no RLS at all.

I'm now 5 months into this treatment, and I still don't have any RLS. My potassium levels are normal, and I have no side effects from the medication. I can't even believe what a relief it is not to worry about sleeping after 20 years of moderate to severe RLS. I know it sounds "too good to be true," but I felt I needed to write about my success so that perhaps other people might possibly find some relief in the same way. I hope that it helps others, and I hope other doctors will study this treatment further.

ViewsAskew wrote:Welcome to the board. Thanks for sharing....now off to read about it!

Thank you, ViewsAskew. I feel like a snake-oil salesman coming onto the board and popping off about the benefits of this drug! But I've suffered so badly for so many years and now feel such relief. I really hope others might be able to find the same relief. RLS sucks.

Fascinating and kind of exciting that it works for you. Please keep us posted. I am not impressed with the journal publisher's reputation (see https://www.the-scientist.com/?articles ... y-Journal/), nor with the article itself, but if it's working for you, I do want to hear about it!

PS in case anyone's wondering why I am not impressed with the article: the lack of a control group & lack of blinding combined with the too-perfect results suggests (at best) a strong placebo effect; the premise that muscles are the culprit is odd (it's all about sensations, not muscle movements); the criteria used to diagnose RLS/WED are not explained; some of the references (20% of them) are websites like wikipedia or, worse, untraceable things like "Higdon J (2011) Potassium Deficiency Contributes to Poor Health. Nutritional Supplement Center.".

MODERATOR NOTERob: I have merged this topic and the one you started in the Just Joined forum. We discourage posting the same information in multiple forums because on this discussion board, we don't have so much traffic that anyone would get different readers in different forums. Hope this doesn't cause any confusion!

badnights wrote:Fascinating and kind of exciting that it works for you. Please keep us posted. I am not impressed with the journal publisher's reputation (see https://www.the-scientist.com/?articles ... y-Journal/), nor with the article itself, but if it's working for you, I do want to hear about it!

PS in case anyone's wondering why I am not impressed with the article: the lack of a control group & lack of blinding combined with the too-perfect results suggests (at best) a strong placebo effect; the premise that muscles are the culprit is odd (it's all about sensations, not muscle movements); the criteria used to diagnose RLS/WED are not explained; some of the references (20% of them) are websites like wikipedia or, worse, untraceable things like "Higdon J (2011) Potassium Deficiency Contributes to Poor Health. Nutritional Supplement Center.".

Badnights -- I agree that it's not a perfect study, nor necessarily a perfect journal. Also, it's just one study with an n of only 68, which doesn't mean much. A control group would be good, as would a double-blind method.

However, you're too dismissive. You say "it's all about sensations, not muscle movements." You're incorrect. Some people report one, some the other, and others both. The authors recognize both, and the criteria are well-explained. Fourteen of the eighteen references are to peer-reviewed journals or textbooks by major publishing companies. Yes, they reference wikipedia, but in a minor note about Gabapentin.

I think you're assuming too much to therefore chalk everything up to a placebo. You don't have enough information to make that assumption. In my own particular case, I would doubt that placebo effect accounts for not only the alleviation of RLS, but also for PLMS. How exactly would a placebo alleviate kicking in my sleep that I wasn't even aware of myself (my wife would report it to me)?

Always good to be skeptical. I'm the first to argue that we must be as critical and skeptical as possible of scientific literature. But we should also be fair-minded. And, in this case, keep in mind that the side effects are minimal, especially if closely monitored, and could therefore give hope to folks with no more options, as well as ground for easy and safe further medical study.

Thank you for sharing with this board. Would you say there are differences in your response to potassium from food sources (like bananas or avocados), OTC supplements, and the Rx supplements? Also, your blood levels not changing, any explanation that you’ve found for this?

badnights wrote:Fascinating and kind of exciting that it works for you. Please keep us posted. I am not impressed with the journal publisher's reputation (see https://www.the-scientist.com/?articles ... y-Journal/), nor with the article itself, but if it's working for you, I do want to hear about it!

PS in case anyone's wondering why I am not impressed with the article: the lack of a control group & lack of blinding combined with the too-perfect results suggests (at best) a strong placebo effect; the premise that muscles are the culprit is odd (it's all about sensations, not muscle movements); the criteria used to diagnose RLS/WED are not explained; some of the references (20% of them) are websites like wikipedia or, worse, untraceable things like "Higdon J (2011) Potassium Deficiency Contributes to Poor Health. Nutritional Supplement Center.".

Badnights -- I agree that it's not a perfect study, nor necessarily a perfect journal. Also, it's just one study with an n of only 68, which doesn't mean much. A control group would be good, as would a double-blind method.

However, you're too dismissive. You say "it's all about sensations, not muscle movements." You're incorrect. Some people report one, some the other, and others both. The authors recognize both, and the criteria are well-explained. Fourteen of the eighteen references are to peer-reviewed journals or textbooks by major publishing companies. Yes, they reference wikipedia, but in a minor note about Gabapentin.

I think you're assuming too much to therefore chalk everything up to a placebo. You don't have enough information to make that assumption. In my own particular case, I would doubt that placebo effect accounts for not only the alleviation of RLS, but also for PLMS. How exactly would a placebo alleviate kicking in my sleep that I wasn't even aware of myself (my wife would report it to me)?

Always good to be skeptical. I'm the first to argue that we must be as critical and skeptical as possible of scientific literature. But we should also be fair-minded. And, in this case, keep in mind that the side effects are minimal, especially if closely monitored, and could therefore give hope to folks with no more options, as well as ground for easy and safe further medical study.

As far as I know, there are no involuntary muscle movements associate with RLS. Not saying that some of us have not felt that we had them, but no clinical description that I am familiar with mentions them.

The International RLS Study Group lists the following criteria:1. An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.1, 2

2. The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.

3. The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues. 3

4. The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.4

5. The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).

None of this mentions muscle contractions or movements. Differential diagnoses lists often include involuntary contractions, such as with muscle cramps, and are indicated not to be confused with RLS.

I heartily agree with badnight's appraisal of the study and the journal as well as how she presented it. Nowhere did she use absolutes - she either stated facts or used terms such as "suggests" or stated facts, such as 20% of the sources were in question. It is essential that we are appropriately critical of the scientific methods used in studies.

That does not in any way diminish your results. And, whether it is what the authors suggest, a placebo effect as badnights considered it might be, or something else, it is working and that is great. Hopefully, though better studies. they will pinpoint why.

yawny wrote:Thank you for sharing with this board. Would you say there are differences in your response to potassium from food sources (like bananas or avocados), OTC supplements, and the Rx supplements? Also, your blood levels not changing, any explanation that you’ve found for this?

Yawny -- good questions. I started out eating bananas and avocados frequently when I initially identified potassium as a suspect. But on the 10mEq daily, it doesn't seem to matter whether I eat them or not. In the last three months, I really haven't included those in my diet.

I found that the typical 99mg OTC supplements did nothing to alleviate the RLS or the PLMD/S.

My blood levels did change slightly. I believe I moved from 3.7mEq/L to about 4.3mEq/L. That isn't a significant change, but my levels did go up slightly.

badnights wrote:Fascinating and kind of exciting that it works for you. Please keep us posted. I am not impressed with the journal publisher's reputation (see https://www.the-scientist.com/?articles ... y-Journal/), nor with the article itself, but if it's working for you, I do want to hear about it!

PS in case anyone's wondering why I am not impressed with the article: the lack of a control group & lack of blinding combined with the too-perfect results suggests (at best) a strong placebo effect; the premise that muscles are the culprit is odd (it's all about sensations, not muscle movements); the criteria used to diagnose RLS/WED are not explained; some of the references (20% of them) are websites like wikipedia or, worse, untraceable things like "Higdon J (2011) Potassium Deficiency Contributes to Poor Health. Nutritional Supplement Center.".

Badnights -- I agree that it's not a perfect study, nor necessarily a perfect journal. Also, it's just one study with an n of only 68, which doesn't mean much. A control group would be good, as would a double-blind method.

However, you're too dismissive. You say "it's all about sensations, not muscle movements." You're incorrect. Some people report one, some the other, and others both. The authors recognize both, and the criteria are well-explained. Fourteen of the eighteen references are to peer-reviewed journals or textbooks by major publishing companies. Yes, they reference wikipedia, but in a minor note about Gabapentin.

I think you're assuming too much to therefore chalk everything up to a placebo. You don't have enough information to make that assumption. In my own particular case, I would doubt that placebo effect accounts for not only the alleviation of RLS, but also for PLMS. How exactly would a placebo alleviate kicking in my sleep that I wasn't even aware of myself (my wife would report it to me)?

Always good to be skeptical. I'm the first to argue that we must be as critical and skeptical as possible of scientific literature. But we should also be fair-minded. And, in this case, keep in mind that the side effects are minimal, especially if closely monitored, and could therefore give hope to folks with no more options, as well as ground for easy and safe further medical study.

As far as I know, there are no involuntary muscle movements associate with RLS. Not saying that some of us have not felt that we had them, but no clinical description that I am familiar with mentions them.

The International RLS Study Group lists the following criteria:1. An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.1, 2

2. The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.

3. The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues. 3

4. The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.4

5. The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).

None of this mentions muscle contractions or movements. Differential diagnoses lists often include involuntary contractions, such as with muscle cramps, and are indicated not to be confused with RLS.

I heartily agree with badnight's appraisal of the study and the journal as well as how she presented it. Nowhere did she use absolutes - she either stated facts or used terms such as "suggests" or stated facts, such as 20% of the sources were in question. It is essential that we are appropriately critical of the scientific methods used in studies.

That does not in any way diminish your results. And, whether it is what the authors suggest, a placebo effect as badnights considered it might be, or something else, it is working and that is great. Hopefully, though better studies. they will pinpoint why.

The article does not say that RLS is in any way defined as causing involuntary muscle movements. However, it does note that "most individuals with RLS have limb jerking during sleep" and that "most patients have rhythmic leg movements during sleep hours, called periodic limb movement disorder (PLMD)." Both statements are backed by well-documented medical research that indicates about 80% of RLS sufferers also have PLMD. The authors do not, as you suggest, define such limb movements as an essential component of RLS. So your reading is incorrect. If you disagree, please quote the journal directly.

You're also incorrect that "nowhere did [badnights] use absolutes." She states as an absolute that "it's all about sensations, not muscle movements." The research disagrees; most RLS sufferers also suffer from involuntary muscle movements, as I said above. Badnight's criticism here is really a straw man, and is not appropriately critical, but rather an unfair and unjustified reading of the article without direct quotation. The article clearly explicates the nature of RLS, and also appropriately correlates it with PLMD, but does not confound the two.

I agree with the criticism that 1) we need a control group, and 2) that not all references are from reputable medical sources. I would add that we could have used a bigger sample size and a double-blind experimentation method. However, badnights therefore concludes that, "results suggests(sic) (at best) a strong placebo effect." That's an unjustified claim, as a couple of poor references and a lack of control group do not undermine results published in a peer-reviewed medical journal. One can say that we need further study with larger population sizes and more rigorous experimentation methods. If we're really going to advocate critical thinking, however, then we need to distinguish between appropriately cautious readings and the kind of unjustified dismissiveness badnights is advancing. They are not one and the same.

By the way, it smells strange to me that both mods pile on with "hearty agreement" against a journal article after they've moved my post about a prescribed medication to the supplements section. And they did so without asking or informing the original poster (myself). I've moderated boards like this many times myself, and this never would have been kosher on any of them.

Rob: I'm sorry you were upset about my merging the Topics. I should have pm'd you, and I thank you for suggesting it. I will make that my practice from now on. If you're curious about our policies here, please see the Forum rules (at the top of every page, the pink bar), which mention no duplicate posts. Every discussion board has different rules.

Please don't misunderstand my scepticism or pretend that when I say something is suggested, that I am claiming something is true. I haven't made a claim of anything, I have only listed points that suggest something might be amiss. (As a further note of caution, I will point out that in the sentence I just wrote, I used "suggest" and "might"; please don't misrepresent me by saying I'm claiming something.)

I made this statement: "(it's all about sensations, not muscle movements)" . By that, I am referring to the diagnostic criteria, which viewsaskew has listed and which refer only to sensations, not muscle movements. So I am correct to have made that a statement of fact.

My RLS symptoms are 24/7 and are felt in my legs/arms and shoulders. I suffered 24/7 symptoms for many years (15) before I ever began medication. Been on medication now for about 18 years.

I guess it is a blessing that I am one of the fortunate sufferers who does not have PLMD/S or any sort of involuntary muscle movement.My husband confirms that I don't kick, twist, or jerk while I sleep. I am thankful for small mercies.

Rob, thank you so much for sharing so that others can learn from your experience and possibly have the same outcome. I’m fascinated by your results and of course I have more questions (thanks for your patience)!

Based on your reference to PLMD/S, I’m assuming you had PLMD/S and it has been alleviated by the 10mEq Potassium Citrate? Would you mind sharing a description of your pre-potassium symptoms? I have moderate to severe PLMD/S (determined by my sleep doctor & husband...who now sleeps in another room).

Also, I’m wondering if the timing of your 10mEq PCitrate is important…you mention dinner time and I’m wondering in what circumstances you’ve found it works best: away from sleep, with food, with other supplements? Or, if not, why dinnertime?

You mention that OTC supplements didn’t alleviate your symptoms...did you take the equivalent dosage to the prescribed potassium citrate? Do you think 10mEq PCitrate is absorbed different than its equivalent in OTC supplements? Is it a different form of potassium or maybe different fillers?